Parkinson’s: Spooky facts and Hospital Visits

A Journey Into Parkinson's with Nancy Mellon

Coordinated by Corrine Bayraktaroglu

 A Hospital Visit 

A Spooky fact coming up

I am struggling to figure out how to write about this. It's very good information. It's about something really helpful that the Parkinson's Foundation provides for free. All good reasons to tell you about it. But it starts with a spooky fact. I don't like spooky facts or spreading them. But I think this is important for us to know. And I can also tell you about how you can protect yourself from the spooky fact!

So here goes:  People with Parkinson's disease are 50 percent more likely to be admitted to a hospital than their peers. And, once admitted they typically have longer hospital stays.

Now here is the Good News:

The Parkinson Foundation has created an Aware in Care Bag. It's a belly bag with all the information in it that you need to give to the doctors and nurses you are going to deal with at the hospital. You will be ready and armed, you can can grab it and take it with you to the hospital. It will help you avoid medication related problems and other complications during your stay.

Before you need it: you read the Hospital Action Plan booklet that they send with information about what you need to do to get ready for a hospital stay. It starts by suggesting you find a good hospital, before you need one. You do it, by calling hospitals and asking a list of questions (they provide the questions to ask.). 

In the bag-

1. There is a  Medication Form- you need to fill it out beforehand, and make 5 copies sof it. It has a place to list important names and numbers, an area for check marking special considerations: like- you might have had deep brain stimulation or have balance issues or trouble swallowing or hallucinations etc. You will also need to fill out the information about what medicines you take and when you take them. 

2. It also suggests that you have ready an extra supply of all your current medicines in the bag in original bottles with your name on each label. Check to make sure that the dose on the label matches what you are currently taking..

3. There is a also a letter about Parkinson's that you are going to give to any Dr.s you have in the hospital. It needs to be signed beforehand by your Doctor. Make copies of it. In the letter (supposedly) from your Parkinson's Dr. (but it is already written out for your Neurologist or Movement Specialist to sign) are facts about Parkinson's to give to all the Doctors that you see in the hospital. (A couple of the things it says are: that you need to take your Parkinson's medicine at the times you are used to and explains why. It says that “if nurses are unable to distribute medications based on your specific schedule that the your Dr. recommends giving the patient/ or their care partner the authorization to self administer medications while in the hospital.” It also states that they stress the importance of having a care partner present as an advocate whenever possible.) It lists a lot of other situations that might come up and gives recommendations on how to approach them for a person with Parkinson's. It is a very good letter. 

4. In the kit is also an ID Bracelet for you to wear. 

5. There is a also a pad of fact sheets to give to your nurses in the hospital. It lists ways to avoid serious side affects, medicines that are contraindicated in Parkinson's disease, common symptoms with Parkinson's, typical Parkinson's medications, Special alerts and Consequences of untimely medication administration.

6. In your kit is also a magnet to put up in it that says “ I need my Parkinson's medication on time, every time.”

7. The brochure suggests you add in a signed Health Care Proxy Form

The Brochure also lists these suggestions for while you are in the hospital:

• Be vocal while you are in the hospital. It gives you a list of things to ask for or do. (Such as- “you will probably encounter new staff each day, assume that each person has little experience with Parkinson's disease. The best way to share information is to present each member of your care team with a ”Parkinson's Disease Fact sheet for Nurses”)

• Get moving

• Stay on Top of Your Care

• Follow Up and Provide Feedback

The booklet ends with:

1. a checklist for a planned hospital stay, 

2. a checklist of things to do during your stay, 

3. a checklist for an emergency situation, 

4. a list of special considerations, 

5. a page of information on how we can make hospitals safer for people with Parkinson's disease 

6. a list of medications that may be contraindicated in Parkinson's disease.

It is a very useful booklet. The whole kit is a wonderful tool to help anyone with Parkinson's be prepared for a hospital stay. You can get it here; Aware in Care Kit

In writing about this, I realized how much I still need to do! My medication has changed since I filled out that form. And I haven't yet gotten my doctor to sign the letter and I never checked into the hospitals. So here's to all of us, as a New Year's resolution, we'll take good care of ourselves and get the Aware In Care Bag and fill it out and get it ready to roll!

Cheers,

Nancy and the Snark

Footnotes From Corrine - Sorry for the delay in posting 😜